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Celiac Questions

Discussion in 'Parents of Children with Type 1' started by Chippy28, Mar 28, 2013.

  1. Chippy28

    Chippy28 Approved members

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    Hello all,
    Apologies for posting in this forum, but the celiac board seems a bit deserted.

    Anyway, my Endo added a celiac panel to my recent bloodwork. It came back positive and met with a GI this morning. He believes based on my results that I definitely have celiac, but wants an endoscopy done before he provides an official diagnosis. My endoscopy is scheduled for next week.

    As I am sure those who have dealt with a celiac diagnosis know, this is a bit overwhelming. I have done a lot of my own research but had a few questions:

    1. Any recommendations for books, forums, blogs, etc?
    2. I know that gluten is completely off-limits. How paranoid (for a lack of a better word) do I need to be about this? I have been reading about a need for GF hair products and makeup as well as celiacs requiring their partners to brush their teeth prior to kissing them if they eat gluten. I want to maintain my physical health as well as my emotional health when dealing with these changes.
    3. I'm Catholic. My understanding in the Catholic Church the communion host must be made of wheat. Any ideas on how to tackle this issue? I don't go to church nearly as often as I should, but this is a concern of mine.
    4. Did you meet with a dietician following diagnosis? If so, did you find the visit helpful?
    5. I know most of the celiacs here are kids, so this might not apply, but did you notice any changes in weight after following a GF diet? After my type 1 dx, I gained quite a bit of weight and am hoping to avoid any such issues following this diagnosis.
    6. Any other advice?

    Thanks so much for the help!! :)
     
  2. my365roses

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    Hello,
    We aren't diagnosed with Celiac but I have found my kids do alot better with out gluten in their diets.

    Gluten free Gigi and Gluten Free Chef has alot of good baking information. Celiac foundation has alot of information also. Youtube has a TON of stuff just type in g/f cooking.
    My suggestion is start out small! Bob's Red Mill has an all purpose g/f flour it is pretty good if you don't mind the garbanzo bean flavor. I can't really taste it but some can.
    Alot of asian shops will have the various flours cheaper than what you can get in the regular stores.

    The suggestion given to me from friends who have gone through the tests after a positive blood test is load up on gluten the week prior to the test so they can get a more accurate result.

    Just breathe and look at cooking as more of a science experiement. It can be fun and frusterating but there is a ton of information out there.

    Hope this helps.
    Jen.
     
  3. Christopher

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    I don't have any experience but I PM'd someone who has a lot and I am hoping they respond to you soon. I am sure they can help you. :cwds:
     
  4. Momontherun

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    Gluten free communion host are available, arrangements would need to made with the pastoral administrator or the priest to have available when you attend church.
     
  5. Chippy28

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    Thanks for all the information! I am trying my best not to become overwhelmed by the whole gluten free thing, but as a busy working student who is a picky eater and hates to cook, it is difficult not to feel like my head is spinning a bit.:eek:
     
  6. kim5798

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    After a while, it is not that big of a deal. In the beginning, best to stay with "whole" foods; fruit, veggies, proteins. If you post the kinds of foods you like to eat, we(parents of celiacs) will likely have some suggestions for you regarding different products, brands & things to try. I would say not to avoid posting on the celiac board...we are there! I know I for one check the board, but not a lot of new posts going on.

    take care & feel free to PM with any questions!
     
  7. Beach bum

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    I don't have Celiac, but I have family and friends with Celiac. So, I will answer what questions I can.

    1. Any recommendations for books, forums, blogs, etc?
    My friend Tweets:
    https://twitter.com/DrCDoherty


    3. I'm Catholic. My understanding in the Catholic Church the communion host must be made of wheat. Any ideas on how to tackle this issue? I don't go to church nearly as often as I should, but this is a concern of mine.

    Our church actually has GF hosts:) They have the GF parishoners bring in their own small container (most use pill boxes) and tell you where to sit so you know which line to get into. It does require you to arrive at church about 15 minutes early. Prior to our church getting hosts, my friends MIL got them online, brought one in her little box to church every week. Now, just to give you a heads up. Not all churches are as embracing of the GF hosts as ours. My friend actually left a church because the priest (very old school) refused to give her a host without gluten.


    5. I know most of the celiacs here are kids, so this might not apply, but did you notice any changes in weight after following a GF diet? After my type 1 dx, I gained quite a bit of weight and am hoping to avoid any such issues following this diagnosis.

    My cousin was diagnosed at 19. He was bloated all the time, and found that once he went GF his weight first went up (as he was trying to figure diet out, relied on starches) and then once he became more comfortable with the diet, he lost and now leveled out. He has also said about 1 month after diagnosis he felt good, 3 months best he had felt in years. He didn't know what it felt like to not be bloated and have a constant stomach ache. It was always brushed off as sensitive stomach. How did he finally get to a doctor? He went to college and a friend who has Celiac said he should get it checked out and he was diagnosed.

    6. Any other advice?
    Good luck! While it seems daunting, GF has come such a long way. Friends and family have all said that it is easier to find products and easier to eat out now, with a bit of research. Most of all, they feel so much better!
     
  8. AmyJoeBut

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    I'm new to the forum, but my 6 year-old had 2 positive tests and now we are going for the endiscopy next week.

    I had way too much time between the second test and the scope to research stuff and freaked myself out a lot! But from everything that I read, it does seem like it is doable once you get the hang of things. Guess we might be learning stuff together. : )

    I was also curious about Communion-- interesting to know that they have a gluten free host.

    Good luck with everything! Hang in there!

    Amy
     
  9. Chippy28

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    Thanks again for all the info and support. It has been really helpful and comforting.

    I guess I am not so much worried about cooking at home, but with my busy lifestyle, a portion of my meals are eaten outside of the house. I know a lot of people recommend not to eat out right away, but that is something I am honestly not willing to give up. I want to learn how to incorporate a celiac diagnosis into my life and not let it control my life. Any advice on eating out would be extremely welcome!:) Also, any recommendations on snacks that can be eaten in the car or between classes? Most recently my normal go-to snack had been those prepackaged peanut butter crackers.

    Amy, it sounds like we are in similar situation. I have also had 2 positive tests with an endoscopy next week and had way too much time to research things! At the same time though, I appreciate the time to learn and get acquainted with the GF lifestyle before being thrown right into things. It is allowing me time to mourn for my loss, I guess. Unlike my diabetes diagnosis which was more of a baptism by fire. :) Good luck with everything as well! I hope your family's transition goes smoothly!
     
  10. kim5798

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    Snacks for between classes etc...nuts, dried fruit, fresh fruit, veggies. Crackers are a real bummer for celiac. We have found a couple that are decent, but the price is outrageous. Yogurt is another good snack. There are gluten free granolas. My daughter will sometimes eat dry cereal as a snack...but then she did this before celiac too:)
     
  11. Lakeman

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    I agree on the crackers.

    I like making silver dollar pancakes then drying them in the oven so they get crisp like crackers. Better than anything from a box.

    Good recommendations for snacks. Add cheese. Once the kids learn to like fruits and vegetables the world opens up in a new way.
     
  12. Beach bum

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    Check Walmart. Ours has a fairly large GF selection and the prices, while a bit high, aren't crazy.

    You can also make crackers out of cheese. Grate cheese, put it on a parchment lined pan and bake until crispy. While you can't just pop these into a ziploc for lunch boxes, you can put them into a container and they hold up.
     
  13. Chippy28

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    Thanks for all the suggestions! Sadly, I have never been a huge fan of fruit, raw veggies, nuts, or anything else that requires preparation or forethought!;) It was just so easy to throw a package of PB crackers or a granola bar in my purse and know that I had an easily accessible 30g carb snack with a bit of protein. Guess I am going to have to somehow expand my palate and learn to enjoy cooking!:eek:
     
  14. kim5798

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    I may try the cheese baked like that. She is a big cheese fan:)

    Can you post exactly what kind/brand of crackers you found at walmart in your area? And was it with the regular crackers, or in a specific, special food section?

    We recently found some breaded chicken strips by Tyson at walmart & they were good. Weren't looking for them...happened to go down that aisle to get to the meat case, and my daughter was like, hey, gluten free? let's try this!

    another snack idea...Glutino has gluten free pretzels & they are good. My daughter will eat those with cheese or even the little peanut butter to go cups.
     
    Last edited: Apr 1, 2013
  15. Beach bum

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    At ours the GF specialty stuff is with the olive oil. Who knows why! If I recall, it is Glutino. Walmart is weird because they also intersperse other GF stuff with the regular (pasta for example).
     
  16. sooz

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    Someone told me that not all food marked gluten free is gluten free. Is that true? Are they allowed to label food gluten free if there is any gluten in it?
     
  17. kim5798

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  18. sooz

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